Hi all,
Has anyone had success finding someone that will do Botox in the stylohyoid or digastric posterior bellies?
I have extreme pain in this area constantly/pressure here, as well as very odd muscle tissue that has formed in this area only on my affected side that is jello-like and stiff.
Thank you!
Itās one of those things I think that works for some & not others!
@Leah posted this:
Newbieā¦ This seems to be me as well. Would love input on my x-rays - Symptoms and Treatments - Living with Eagle
& @Snapple2020 has tried botox too:
Connection between Eagle and TMJ/bruxism/clenching/tight SCM? - General - Living with Eagle
Does Eagleās make TOS worse? - General - Living with Eagle
BUT, @akc posted this info in a recent discussion:
āIf I may offer a suggestion. Most people donāt know that botox can cause very serious issues. It doesnāt in most people. But has a black box label for the few of us who do. One round of botox for migraine and cervical dystonia took me a year to get āoverā but has left me with some potentially lifelong impacts.
I donāt say this to scare or even put you off of trying it. It helps many many more than it hurts and you need help. I am so sorry that surgery has not helped you at all.
The one bit of advice that I would offer, is to ask for a baby dose of it the first time. You may not get as much benefit in the first round because of it, but if you are going to have a bad reaction to it, it will hopefully be smaller than it otherwise would have been because of the lower amount used. And 3 months later they can increase the amount.
I hesitated to write this, but I wish someone had suggested this to me. So please take this with the good intention I send it with. I had no idea and just blindly trusted that it would be fine, or that at worst Iād feel a bit rough for the first couple of weeks (my Dr did warn me of that as a possibility - but only of thatā¦)ā
There are some other mentions in discussions too, if you search for ābotoxā it comes up with lots, hopefully you can message those members & find out where they got their injectionsā¦hope this helps!
Hi Jules! Thanks so much! Iāve gotten Botox in my right lateral pterygoid and not had an issue with 25 units, thanks for copying all of the info as well as the warning over. Definitely going to be cautious!
Iāve been having a hard time specifically finding a doctor who will inject the Digastric and stylohyoid muscles, I was hoping someone whoās had Botox may know someone! Iām willing to travel (:
Also re the TOS and tight scalenes post, Iām actually going to be getting a work up for TOS soon as well!
Another option that has helped some of our members is an injection of lidocaine/cortisone into the affected area. Most often in this forum we read about it being injected into the tonsil area of the throat w/ ultrasound guidance to get the meds into the proper location, but it could also be helpful with what youāre looking for, @etherealcataclysms.
Thanks Jules for including me. Ive been off dealing with other serious pain issues ie: knee stuff. Our minds go the most severe pain.
I have EDS, dystonia and a long history of neck instability. I have injected about everything there is into my neck seeking relief including prolotherapy, dry needling, acupuncture,etc. More recently I have tried 2 rounds of hydrodissection in hopes of unteathering nerves from scar tissue. Jury is out on that one. I had ES surgery in April & Dec 2020 with limited success. My surgeon did not evaluate me for any vascular compression nor does he generally consider this when doing ES surgery. This is my one regret of mine.
I have had success with botox in all areas my neck/jaw/head as well in TOS related areas since about Jan 2020. It probably is one of the few things that have overall helped me with facial pain and TMJ. One time I had an injection around my collar bone and had quite a reaction. One of my ortho docs feels it was because it wasnāt ultrasound guided and likely hit something my neurologist should not have. It put me in alot of pain for many months. This was because it wasnāt injected properly. I was afraid to try it but got to a desperation point and nothing else working. Additionally I have tried trigger point (lidocaine) injection therapy for facial pain at a major university facial pain center. I declined to return after a couple treatments (which I think may be useful) because the dentist/md had no interest in reading peer reviewed articles that document EDS patients not being able to be effectively numbed.
The amounts to use initially will vary by doctor. Mine started off low dose and had no problems. Ive heard of others getting highly dosed initially and had some major problems. Pick an experienced doctor and make sure he/she starts low dose. I still feel I have scar tissue in my neck compressing nerves. Has I picked a different ES surgeon, perhaps that would have been addressed. My ligaments in neck and the TMJ issues are not easy to manage. It also extends into my shoulder and arm with TOS problems as well. Massage, cranial sacral work has been helpful. One night of bad sleeping position can set me off and can takes weeks to get back somewhat normal. I hope that helps
Good to hear from you, @Snapple2020! Your input is ALWAYS so helpful! Iām really sorry for all the suffering youāve been dealing with & am hopeful & prayerful that in 2024 youāll get pain resolution that allows your life to feel more normal. 
Dr. Fargen recommended Dr. Yoon-Hee Cha in Minnesota. I emailed her directly and she was very responsive. It sounded like she was scheduling around March right now. Here is the process for your first visit.
Thanks so much for your detailed response! Iām so sorry to hear youāre having knee pain, I hope this resolves soon! Iāve also tried dry needling and accupuncture with no success. It feels like my issues are much deeper, and Iām curious the role my palatal myoclonus plays with my ear issues/those surrounding muscles. I will be getting intra oral Botox soon, Iāll report back on this post once I have more info on how it goes.
Hi there! Thatās wonderful, Iām excited for you! Thank you for sharing the specific doctor info.!8 have family in Wisconsin so thatās super convenient. Do you know where the trial anesthetic will be?
So sorry that you now have knee pain to add to all the other issues, EDS is such an awful condition
This sounds interesting. Cant wait to hear more about the results.
Yes ether,
As with you, I suspect they go deeper as well. I had some success with the dry needling but mostly in my shoulders. My neurologist does those intra-oral botox injections too. I saw the special pillows they you to position you. I have struggled myself with ear pain and mild hearing loss in one side. It was severe shooting nerve pain to my ear that started back in 2015 that led me to the ES diagnosis in 2020 and subsequent surgery that same year.
although I have had some improvement in the shooting pain with the combo of ES surgery and botox, that ear pain and ringing is still in the background. I then developed vertigo after having oral surgery that triggered massive jaw and ear pain. It was pretty horrible and took along time to calm down.
I did see two specialists, one back in Chicago at a hearing and dizziness clinic. He suspects it could be the Greater Aricular Nerve buried deep in the mid-neck. Testing shows I have no acoustic reflex in right side. Chicago doc wants me to retest again back w my local doc. Nerve blocks to this area require specific expertise. Searching for someone to perform led me to the specialist who does let me to the hydrodissection that targets releasing the nerve from scar tissue. The doc likes to do 2 in each area before making a judgement call on the effectiveness. I have just had one. Figuring out these nerves in the neck is not an easy task. I have had several nerve blocks and it has been mixed bag. I know the muscle tension and ligaments contribute to all this which botox helps for me. Like you I know the problem is deeper.
Yeah Jules, the older I get, the more the EDS rears its ugly head. All my old skiing injuries are coming back to roost. I had knee surgery in April that was supposed to buy me years before a knee replacement. After a couple months, I began to worsen and in Oct an MRI showed it was an epic fail and seems to excelerated the osteoarthritis and worsened the meniscusās. āMaceratedā is how they described them in MRI. I sought 3 knee surgeon consults and was determined I needed a knee replacement. I still donāt understand how it could have worsened so much. Of course these docs wont talk bad about a fellow colleague. I was supposed to have that done on Dec 22nd. It was cancelled at last minute because my knee surgeon hurt his arm and need surgery himself. I was in so much pain and could hardly walk or stand. I went back to my muscle/skeletal doc who does the hydrodissection who agreed to get me in on emergency for steroids, special viscus solution for knee (lubrication) and draining of large bakers cyst on back of knee. Interestingly, she looked at my MRI and in her opinion felt I did not need a knee replacement yet and maybe it was a stroke of luck my surgery was cancelled. She did a nerve block before the other injections and suspects my knee pain could be from lower back (nerve). Well I donāt know what to think?
I do know that after all her work, the pain has gone from almost a 10 to about a 2 or 3. I can actually walk and stand again. I couldnāt even walk the grocery store without ending in severe pain. I know I still have problems in there. I likely do need a knee replacement but the question is when? Maybe not now. It was rescheduled to March 15 but I am already thinking about putting this off. The joys of aging. The pain in my knee was so severe, it put my neck and ear pain in the category of mild. Loosing mobility is a scary thing.
@Snapple2020 - I can respond to this: Iāve had right hamstring, knee & bakerās cyst pain for years. I have a torn lateral meniscus thatās been mostly asymptomatic except for possibly irritating the bakerās cyst. I also had back, glute, & hip pain which I was convinced were throwbacks to my bilateral hip replacment last year. I saw two physiatrists about the back pain. The first ordered a CT scan & told me I needed a nerve ablation because I had 3 bulging discs between L3-S1. The second showed me the MRI on his tablet & pointed out that the only significant disc bulge is at L5-S1 & recommend a cortisone shot on each side (L & R) of the disc. I decided to go w/ the ālesser of two evilsā & got the shots last July. ALL of my pain was literally erased - including burning pain Iād had in both heels for months. I was truly suprised to learn all of that pain was coming from my back.
Updating this thread: I got Botox in my tensor veil and lateral palatinis, as well as medial and lateral pterygoids. My doctor also did Botox along my jawline and inadvertently put it in one of the bulges of tissue under my mandible that has been causing me pain, it was super tender for days and more swollen than usual.
Itās been a week. I would say my pain is considerably less. My feeling of pressure in my neck and ear remains, however, and feeling of choking. If I touch the strange tissue/muscle/swollen gland or whatever is below my mandible, it still causes sharp pain, and will cause lingering dull pain as an after effect.
Thatās really not fun, @etherealcataclysms. I had a similar situation w/ my left styloid process which I could feel just inside the curve of my mandible. When I poked it, it caused pain in the front of my neck that would linger like that. Iām glad itās no longer a problem, & I hope/expect the same for you. Iām glad you have an appt. w/ Dr. Hackman coming up & hope both you & @Cdbruce get to fill cancellation spots that are much earlier than April.
Good your pain has eased somewhat, hopefully youāll get some answers soon